A poor prognosis with transthyretin amyloid cardiomyopathy (ATTR-CM) can feel overwhelming, confusing and utterly devastating. It’s perfectly normal to go through an array of emotions, from anger to sadness and even hopelessness.
But know that you’re not alone as you navigate this new path, as there are plenty of resources to help you along this journey.
Understand your prognosis
First, it’s important to understand what is meant by a “poor prognosis.” Often, doctors use this term to describe a likely course of the disease based on past data. However, this doesn’t take into account individual differences.
No two cases of ATTR-CM are exactly alike. The disease progresses at varying rates: Some people decline quickly, while others live for years with careful management.
Learn more about ATTR-CM prognosis and staging
Talk to your doctor and ask any questions you have about your diagnosis, prognosis and treatment options. The more you understand, the more empowered you’ll feel to take charge of your health.
Focus on managing your symptoms and quality of life
Follow your treatment plan, taking medications as prescribed and making the lifestyle changes that can help you feel better while living with ATTR-CM. These include:
- Eating a healthy diet, with plenty of fruits and vegetables, lean proteins and low-fat dairy, as well as limiting processed foods and added sugars.
- Following your doctor’s instructions on sodium and fluid intake.
- Limiting alcohol.
- Quitting smoking.
- Exercising within your limits.
- Monitoring your weight to check for fluid retention.
- Wearing compression socks to reduce swelling in legs.
- Prioritizing restful sleep.
These steps will help you live every day feeling the best you can, but they’ll also mean better health down the road, too.
Seek out support
Living with a chronic illness can take a huge mental toll. Don’t be afraid to seek help to ease the burden.
- Reach out to loved ones: Talk to family and friends about your illness and allow them the chance to offer support. If there’s something specific you need assistance with, such as daily tasks or activities, let them know how they can help.
- Find a support group: These groups can be a major source of connection and strength where you can speak with other individuals and families affected by ATTR-CM. Organizations like Amyloidosis Support Groups can help connect you with support networks in your state. Your doctor may also be able to recommend a local group that meets virtually or in person.
- Consider professional help: If you’re having trouble coping with your ATTR-CM prognosis, speaking to a therapist or mental health counselor can help you find ways to process your emotions and develop coping strategies.
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